Delayed diagnosis and medical gaslighting

As a disabled person living with several long-term health conditions, I have found myself facing significant challenges within the healthcare system. Medical gaslighting and diagnostic overshadowing have been a persistent issue; on numerous occasions, new symptoms were dismissed as simply being a consequence of my existing conditions.

It took almost eighteen months – during which my health deteriorated considerably -before I was finally listened to and offered the support I needed. Eventually, an autoimmune disease was diagnosed, and I began immunosuppressant treatment. While this treatment has been helpful, it has also made me more susceptible to other infections.

Fragmented mental health support

Due to a long-term condition, or disability, I was originally sent to one team, which decided another team was best placed. I went to this team and was passed on again. This is very hard to deal with when you are both physically and mentally unwell, and hard to navigate.

Exclusion from appropriate pain management

When I tried to access Pain Management support I was told I was not suitable for this, as I had complex PTSD and they felt it was unresolved.

As a result of this, I used opioid medication (tramadol and codeine) for over 15 years and have permanently damaged the valve to my stomach as a result. This means food can be hard to digest and leaves me with a lot of pain in my stomach. I am now closely with my GP and the practice pharmacist to reduce medications for this, but also so I can take some other medication to deal with POTS (postural orthostatic tachycardia syndrome).

Barriers to Timely Support

Accessing timely support remains a struggle. Long waiting lists and a continual cycle of referrals between specialists often result in delayed care and poor communication.
For example, I saw a neurologist eighteen months ago, yet my GP is still waiting for the report. After an endoscopy, my GP had to chase up the results a year after the investigation. The hospital trust uses a different record system, which means correspondence is sent by post—an inefficient process that frequently leads to delays and lost information.

The burden of disability-related bureaucracy

Navigating the bureaucracy associated with disability and long-term conditions is a continual source of stress. Every aspect of my life seems to require fresh medical evidence, adding to the pressure I already experience.

For example, when studying, I have to apply for Disabled Students’ Allowance (DSA), which is a lengthy process with constant administrative hurdles. Despite having successfully received DSA previously, I have now been asked to verify my identity again, which requires producing multiple forms and documents.

The reassessment process for Personal Independence Payment (PIP) is similarly stressful. Although my condition is degenerative and will only worsen over time, I am reassessed every three to five years. This stands in stark contrast to the previous Disability Living Allowance (DLA), where I had a lifelong award. The anticipation of reassessment and the substantial paperwork involved often exacerbate my health problems.

I also receive adult social care support, but this too involves annual reviews, further paperwork, and additional assessments. All these layers of bureaucracy add to the ongoing stress and make it increasingly difficult to manage both my health and daily life.

Caring responsibilities and family impact
My health is interconnected with the rest of my life. I am a carer for my two younger children, both of whom are Autistic and have and numerous other conditions.
Navigating the health and disability support system presents significant challenges, not only for individuals but also for those providing support. Assisting a family member through numerous appointments and complex bureaucratic processes can be especially demanding.

For instance, my daughter remained on a waiting list for her autism assessment for three years. During this extended period, her mental health declined due in part to inadequate support from her educational institution. It was only when her condition reached a crisis point that she was prioritized for diagnostic evaluation; subsequently, her school began to offer appropriate assistance, anticipating a confirmed diagnosis.

Additionally, my daughter is awaiting closure of a heart valve – a procedure typically completed shortly after birth. While her cardiac condition is currently manageable, she attends biannual monitoring appointments in Newcastle, which requires considerable travel. Medical professionals have indicated that, as she ages or should she become pregnant, intervention will be necessary. In the interim, however, there is a sense of being deferred, with minimal proactive engagement regarding her long-term care.

Work, and financial pressures

Due to a decline in my health, I was compelled to reduce my working hours. I am fortunate to be employed by a Disabled People’s Organisation, where I receive considerable support; this has contributed to a much-improved work-life balance.

Previously, frequent periods of illness meant I was regularly off sick. Each time my health permitted a brief return, I struggled to catch up on missed work, which led to further deterioration in my condition. At that time, my life revolved almost entirely around work or being bedridden due to illness caused by work.

Now, with fewer hours, I find myself engaging more with the Department for Work and Pensions (DWP), which introduces another layer of stress.

Lack of patient-centred care
I strongly believe that healthcare professionals should recognise patients as experts in their own lives. Listening and valuing the lived experience of those accessing care is essential for effective treatment and support.